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Old 03-18-2008, 02:30 PM   #1
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Not Lupus!!!

Hi all! I have been waiting for a lupus screening and have been very anxious. I have been very sick and the symptoms match but guess what?????? The rhuemy said ...........Chronic Fatigue syndrome and fibro!!!!!

Don't get me wrong I DID NOT want lupus. But to be frank at least it is a dx that you can be sure of. You take the tests and it's yes or no. To be as sick as I have been and I'll tell you everything besides the ana was neagative!!!

I love the sun and have never noticed by being in the sun I was any worse than before. BAsically I am sick no matter what. But I must admit I was a little dissappointed. To have a test come back negative when you are sick just feels like you are not justified. Only the chronically ill can relate to this I think. I have caught myself going over the lab results a few times. It is still there...negative. I am so used to little things always being off on my lab work. Never anything major.

Well. I guess this is the board I belong on. But I will never quit trying to find answers. This is just such a bizzare illness. To be sooooo sick and yet have very little in the way of testing come back as positive. Sometimes I think I am so sick SURELY this blood work will show SOMETHING!!!

Thanks for listening!!

Deena

 
Old 05-07-2008, 06:12 AM   #2
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Re: Not Lupus!!!

Hi Deena, I am glad to hear your not giving up. There are lots of bacteria's and virus's you could be tested for and possibly you'll find your answers. People's bodies don't just get sick for nooooo reason. There is a reason and as you see you have to be your own advocate. If majority of doctors can't see it then they will just keep telling you to live with it. ugh!

Things my doctor tested me for....I already knew I had lyme and had only one doctor treating me for it. So after he retired I started seeing my current researcher/ doctor... He tested my thyroid titers, tested my CMV, EBV and other herpe titers.

Tested for Chlamydia Pnumoniae, and mycoplasma. This would be a real good starting point for you. They are bacteria's that are passed along via sneezing coughing...

Or it might really benifit you if you went to Sacramento and saw the doctor I see. He is someone that will look outside of that box. I do phone consults with him so I don't have to drive the 3 hours one way.

I wish you the best!


 
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Old 05-12-2008, 08:29 AM   #3
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Re: Not Lupus!!!

MOMOFBOYZ,
What are you symptoms? I have been looking too for what is making me so sick. I do have intermittent high calcium now and also positive ANA at 1:640. Let us know how you are?



jojo,
Do you have positive ANA?


mmee

 
Old 05-12-2008, 08:33 AM   #4
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Re: Not Lupus!!!

Yes I had high ANA for eons of years. Means you have some type of infection going on. Weather it be bacterial or viral.

What have you been tested for.? What type of symptoms do you have?

Not ALL test are reliable just know that okay.....

I don't "think" my doc test me for ANA anymore...it is a no brainer that I have/had tons of things going on....

I am doing SOOOOO much better....finally!


 
Old 05-12-2008, 10:54 AM   #5
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Re: Not Lupus!!!

jojo,
Did they ever come up with anything why your ANA was high?

I tested positive for the **** pattern and speckled pattern, but they did not come up with anything. I was tested for all of the diseases related to both patterns and nothing matched. I was also tested for lyme 3 times.

I have intermittent high calcium now, never had a pth ran with it when it was high yet. I also have tachycardia, right hip pain, muscle spasms and pain (myofascial pain disorder), off and on headaches, some vision distortions off and on, brain fog, and probably more but that is all I can think of right now.

How did you start to feel better? And what sort of symptoms did you have?


thanks,
mmee

 
Old 05-12-2008, 11:57 AM   #6
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Re: Not Lupus!!!

I had/have Lyme, Chlamydia Pnumoniae, Babesia, "Bartonella, EBV high titers, CMV high titers, thyroid problems, and every darn smyptom you can think of...diagnoised with things such as bi-polar, ADD, dementia, Alsherimers, metal retardation, some thought I had lupus, fibro, CFS, gullien's disease, myofascial pain,...on and on and on...ugh!

It took alot of tears and alot of jumping from doctor to doctor to find TWO doctors that Lisented to me. I've been on antibiotics for around 8 years, anti-virals and tons of supplements. Different treatment protocols. Alot of looking and reading on my own. Figuring this stuff out.

You have a positive ANA it means you have a infection. You have inflamation going on...doesn't necessarily mean you have lupus...

Not all test are accurate. Lyme test are not accurate. I had many many lyme test..none showed positive. But the WEsteren Blot showed bands. Did you have a Western Blot done????

There are other bacterias that you chould be tested for such as Chlamydia Pnumoniae, Mycoplasma Pnumonaie...have you been tested for those?

What are your readings for Epstein Barr Virus and Cytomeglovirus?

You have high or low thyroid???


 
Old 05-13-2008, 09:54 AM   #7
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Re: Not Lupus!!!

jojo,
I never had a western blot test. We had requested one from the rhemo that I saw, and she said that she did not believe in the test. So, she used the ELISA. I have done alot of reading saying that the Western blot is actually more acurate. I had 2 ELISA done and then 1 of an immuno fluorescent done by another physician.

I do not think that I had all of the additional tests ran that you did. I am really not sure of everything that I had ran to tell you the truth. I need to do some more checking into that.

My thyroid uptake scan showed high as for hyperthyroid, but my blood work has been perfect for thyroid, so he is not doing anything with that. He said that I may have an iodine deficiency. But my calcium has come back high 3 times in about 1 1/2 months. Did you ever have high calcium? Everytime it has come back high, I have never had a pth run though to see if it could be hyperparathyroid, so I am still left wondering.

Thanks so much for all of your information and help.
mmee

 
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